Very low TSH and High T4

Hi,

I have a partial list of test results and I really don't know what to make of this. The last test I had was Sept 29th. My TSH was 19, low T4 and normal but low end T3. Now I have very low TSH, and above normal Free T4.

These results are from the endo that only believes in T4. :'( The other test results from the integrative medicine doc are not done yet but may be done on Monday. She has Free T3 and RT3 on there.

What do you think of these results so far? My hair is falling out and I don't even want to take this stuff anymore. It's not made me feel good anyway. I'm feeling very distraught. IDK why this doc didn't test my T3. This is an endo that's high in the Endo dept at Johns Hopkins hospital. You would think they are inquisitive, but they are just like all the rest. :(

Thyroxine (T4) Free, Direct, S TestLowNormalHighReference RangeUnits

T4,Free(Direct)1.920.82-1.77ng/dL

Tsh Test LowNormalHighReference RangeUnits

Tsh 0.018 0.450-4.500uIU/mL

Thank you,

Marsha

29 Replies

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  • Marvalrus, You were very hypothyroid in Sept but Levothyroxine has replaced your low thyroid hormone. You are a little over replaced to have suppressed TSH and FT4 over range and endo will probably reduce dose slightly. Symptoms can lag behind good biochemistry by a couple of months so don't despair of feeling better.

    The hair loss may be due to being hypo in September. I found hair loss was the last symptom to improve and took about 6 months after I was last hypothyroid.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thank you, Clutter. Do you think I should keep taking my T4? What do you mean symptoms lag? You mean 'feeling better' is yet to come?

    It seems to me my hair didn't start to thin until after I took Synthroid. I specifically asked for Synthroid, but looking around I see people saying Synthroid made their hair fall out. Should I try the generic brand instead?

    As for the dose, well initially the endo started me on 50mcg for 6weeks. During that time I was feeling like crap and reading so much and had one person say that is a low dose, but smart to be put on that first, then increase later. Then I had someone say your under medicated. I was confused and feeling bad so I called this "integrative" doctor that I've seen in the past remembering thyroid management is one of their specialties. I made an appt. She was very thorough, and went as far a testing me for Lyme and Viruses. (that's another story I won't get into) But she put me on 50mcg in the morning and 25 at noon. In two weeks 75 in the morning and 25 at noon. If my heart-rate was less than 88, then I could try 50 at noon.

    In the meantime, I made an appt to try out another 'integrative' doctor on the list at hypothyroidmom. She kinda had the same idea in mind, but she wanted me on 75/50, 2 weeks 100/50, 2weeks later 100/75 etc etc.

    I have since dropped her. She's a money grubber and aT4 freak.

    But I have now leveled myself out at 75 in the am and 25 at noon. I guess I will now go 50mcg am, and that's it. I don't know what my T3 or RT3 is yet.

    I'm very curious.

    Thank you very much.

  • Marvalrus, Yes, I mean feeling better is yet to come.

    So what dose were you taking when you got those results?

    T4 is usually taken as one daily dose. Seems unnecessarily complicated to take some in the morning and more later.

  • I have had many people say to me the same thing, that once daily is all that is needed. With that in mind, I find it odd that both integrative doctors had the same mind thought. Are they in collusion for some experiment? LOL, I be sure to tell them it's not working out! But I dropped the other one. I will express to the other doctor on Monday that I'd prefer to take it once a day. I am going to ask her what the purpose is for twice daily. I kinda hope she'll put me on something else. Seems

    I was taking 100, two 50mcg tablets in the morning and one 50 in the afternoon. So had worked my way up to that.

    I didn't really follow the advice of the other doctor because it seemed to be excessive. I'm glad. With her, I'd be at 125 am and 100 pm and no tests. She said she didn't believe in tests. Only symptoms..... I'm going to report her to the website I found her on. She's not good, a penny pincher and very expensive.

    Thank you.

  • Marvalrus, Just as well you didn't go with the 225mcg doctor as you are a little over replaced on 100mcg.

    _______________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • marsha,,

    T4 does not lower cortisol unless nutrient and iron deficiencies stop it from working properly. In which case the body is stressed (from insufficient thyroid hormone and so producing more cortisol putting a strain on the adrenals).

    You do not need to up your Cortef as small doses are more beneficial to just keep the adrenals ticking over and too much cortisol will just interfere with T4-T3 conversion.

    A TSH of 19 is hugely hyperthyroid so no wonder your poor adrenals are suffering and you feel so unwell.

    You now sound overmedicated but "this stuff' (T4) is much needed and will balance EVENTUALLY so it is important you keep taking it although a dose reduction will be beneficial.

    Unfortunately thyroid hormones take a while to balance and (even with the needed dose reduction) it could still take a further six weeks for symptoms to be alleviated.

    Remember this is the quickest way and you need to just see it out.

    It will be interesting to see results from your integrative medicine doctor. Post results complete with ranges ( numbers in brackets) for members to comment.

    I feel deeply for you as have been there myself.

    Flower

    ………………………………………………………………………………………………………………………………………

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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  • I have not been taking my cortisol regularly because it aggravates my brain fog. I absolutely know when I need it though. I begin to get a weak feeling and my lips turn chalky white. White lips is a sign of low cortisol. I feel fine not taking any Cortef in the morning. And if I do take it, I take one 5mg pill usually around 2. It does help. If I take any in the morning though, I can basically plan on feeling like crap after I take it. I am looking forward to doing my 4 tube saliva as I've never been tested for afternoon cortisol in 10 years and that's when I feel I may need it.

    What do you think about my reply to Clutter? I thought that perhaps I should just drop my T4 back to the initial dose of 50mcg am only? Thank you so much for your advice, it really helps to hear from you and others. Gives me hope.

  • marvalrus,

    My answer should read "A TSH of 19 is hugely HYPOthyroid" - sorry.

    I don't medicate cortisol so can not comment on certain doses at specific times. Just repost a question if you want comments as there are members who have taken this and are very knowledgable.

    Your hair may have started to come out after you took Synthyoid but remember symptoms lag behind good biochemistry by six weeks so maybe this was going to happen anyway ... I don't know ?! ..

    50 mcg Levo is a decent starting dose and 75mcg a good increase six weeks later if results dictate.

    Remember thyroid hormone replacement will only work well with optimal nutrient and iron levels and I agree with Clutter that T4 only needs dosing once a day (it has a long half life so multiple doses are not necessary. ) You have also not been medicating long and it can take several months for the body to really adjust and accept thyroid hormone replacement which requires a certain amount of cortisol to be able to work properly.

    Integrative doctor sounds thorough doing tests. This is really good as gut issues are prevalent in people with low thyroid hormone.

    The adrenals manufacture a number of hormones, such as cortisol, adrenaline, aldosterone, estrogen and testosterone so you may have other imbalances.

    Adrenal function can be improved with optimal levels of Bit B12, Vit D, folate and ferritin and also supplementing a Vit B Complex ,Vit C (with bioflavonoids which helps it to be metabolised ), Vit E, Fish Oil.

    Have you read "Adrenal Fatigue. The 21st century stress syndrome by Dr Wilson.?

    You need to be patient and believe you will get better.

    Flower

    ………………………………………………………………………………………………………………

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

    ……………………………………………………………………………………………………………

  • marvalrus,

    It is important to take your Levo pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.

    Low cortisol levels may give the liver difficulties converting glycogen (the form in which blood sugar is stored) into glucose which is the more active form that is used by the body. This can lead to sugar imbalances and possible insulin resistance. Therefore it is important to eat healthy regular meals including fats, carbs, and protein.

    When future blood testing thyroid hormone levels leave 24 hours between last dose and blood draw and try to have the blood draw early in the morning when TSH is highest after fasting (but drinking water.)

    Medicating Levo will help any Hashi symptoms.

    Flower

    This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.

    thyroiduk.org.uk/tuk/treatm...

    ........................................................................................................................

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

    ..............................................................................................................................

  • I do take it 1st thing in the morning with a cup of water and don't eat for an hour. The endo told me this. I did not take my morning T4 the morning of the test, nor did I take it in the afternoon the day before. I used to take all kinds of supplements. Since the surgery I don't take much. B Complex and an occasional Cal/Mag citrate and that's about it. My iron etc tests were all normal and nothing low end normal. I did read that we don't absorb B12 if we're hypothyroid? Hmmm, maybe I should get that retested. The result in October was 500 something. I think maybe I'll get a low-dose sublingual and just try it out. Thank you for the heads up on the charity. I will def contribute to the cause. I think it's great. I came across this while searching Hashimoto's and it's been so helpful to me.

    Thank you for that info, Flower.

    Marsha

  • Synthroid, as far as I can work out, has a very good marketing department, but nothing much else to recommend it. I think it is the most expensive levothyroxine on the market in the USA, but I could be wrong (I'm from the UK).

    thyroid-info.com/articles/s...

    nytimes.com/2001/07/24/scie...

    Obviously the second of those links is quite old. I don't know how old the first one is. But I thought you might find it interesting.

    With regard to vitamins and minerals, if you could post your results including the reference ranges and the units of measurement we could give you our thoughts on them. The things of most importance for people with thyroid problems are iron, ferritin, vitamin D, vitamin B12, and folate.

    If you take any supplements containing iron, please remember to stop taking them 5 - 7 days before testing. All testing should be done first thing in the morning, having fasted overnight, delay eating and drinking until after testing, but drinking water is fine because dehydration must be avoided.

  • For my upcoming 4 tube saliva Cortisol, instead of doing it next week, I am going to wait two weeks before I take it. During that time, I am not going to take any Cortef or supplements. With your recommendation, I am going to re-order the iron panel that includes all you mention minus the Vit D. I took the "calcitriol" test which is a bit different from the standard and I came up in the normal range on that. Although, it was low/middle range. I hesitate to take it esp in high amounts because it certainly adds to symptoms of muscle pains. Mk7 helped to alleviate that but I don't want to take them right now. The doc who did the Calcitriol test said it's "≈okay" it could be better, but for now, if it added to my symptoms it's not a necessity at this time. I'll mention these recommend tests to her, maybe she'll do them, if not I'll buy them on my own and do them after I do the saliva.

    I will check out those links. Yes, Synthroid is really expensive, I have to wonder why such a difference. Initially I was Rx'd Levo, but on my own initiative I asked for Synthroid because I just thought the name brand must be better, because I know for a fact that name brand Cortef is superior to the generics. Many people report side effects from generic HC whereas Cortef does not. So I just thought I better get Synthroid, but now I'm having 2nd thoughts. I am due for a refill, and I am going to ask for the generic and try it for a number of weeks.

    Thank you for this info, Humanbean.

    Marsha

  • Although I don't know the details, I know there are some people who don't tolerate vitamin D supplements. A member called Epictetus has written many posts on the subject if you want to read what he has said.

    healthunlocked.com/epictetus

    If vitamin D supplements make you feel worse, then you might be one of the people who doesn't tolerate it, and should avoid it.

  • Yes, this is what the doc said, and so she said let's test the other Vit D test that shows whats in the blood. That test I came up in the normal range. This is one of the reasons she said we'd look into that later. I'm SO glad to find other people here, on this forum, who know about this. There is one other person on this forum who I've spoken to about it and she too has the same problem. I'll def check out that link. It's helpful info. I find it to be very curious that the majority of people who initially get tested are low.

    Thank you again.

  • marvalrus

    To find out if you have the vitamin D dysfunction you will need to have calcidiol & calcidiol levels tested.

    Those with the dysfunction will usually have an abnormally high calcitriol level (This is not usually measured).

    This dysfunction is something (most) doctors will not know about so to investigate you will need to read Epictetus' posts. It is very interesting.

    Flower

  • I viewed his page but there are many posts, I've skimmed a few that caught my eye, but not seeing the test specifically. I will ask the doctor about calcidiol. As far as I know, she was giving me the "other" vitamin D test that is not standard, but the result it did say Calcitriol not Calcidiol. I will ask her again. Thank you.

  • Btw: I want you to know I do take Vit D seriously because I know it is vital to conversion. The liver is where the conversion take place, correct? The liver is also the storage for Vit D, so I realize it's importance. The problem I have is how I feel when I take it. Could give me headache too along with the tense muscle. If I take it w/MK7 it is hardly noticeable. There's quite a difference. But I don't know much about MK7, have read some great things, but also that MK4 is good too, has a different effect, but don't like taking all these things, esp now. If it helps me Im all for it, but it makes me feel achy so it hinders my intake. Anyway, I will ask her again about the Vit D test. Thanks again, Marsha

  • marvalrus

    Yes vitamin D is converted in the liver (& kidney) and is responsible for enhancing intestinal absorption of calcium, iron, magnesium, phosphate and zinc.

    If you feel ill supplementing Vit D if might be beneficial to read the following link supplied originally by Epictetus ...

    fearlessparent.org/suppleme...

    I don't know what MK7 & MK4 is ? ? ..

    Flower

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    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

    …………………………………………………………………

  • I will read this. Thank you!

    I had not heard of it either until I went to see a chiropractor in 2014. I saw him for 6 months. Initially during the workup he wanted me on 10,000IU Vit D. I told him of my problem and he said he knew of it (I was shocked) and to try it with Mk7, or Menoquine 7 or even called K2. I went to the vitamin store and I was surprised, there it was K2/D3 combination supplements. I had never known this. He told me to get the, hmm...either 90 or 100mg capsule or gel tab and take it with any amount of Vit D. I did. Took one w/2000 IU Vit D, and I just waited for that feeling to come on, but it didn't. I was impressed. Then I began to read up on it, and found there is a synthetic form MK4. Some like it better, but they are both good for it's purpose. Hmmm. I took this for quite some time and I related my "normal" Vit D level to it. Usually I'm always low. This time normal, albeit low normal. I ran out and haven't really used it anymore. I'm so sick of taking pills and remembering to take supplements. One thing I do take regularly is Fish oil. It has Vit A and D and I like it, which is why I don't forget! There is something about pouring it into a teaspoon the feels like it going to make you feel better! : ) But yes, check it out. Seems very common to find nowadays. K2/D3 combo. Or separately sold at Mk7 and MK4 or both etc. It's interesting. In simple language, it is to assist putting calcium into the bones vs tissue, and even has properties to remove calcium from tissues and veins.

    Thank you, Marsha

  • Arrr .. Thank you Marsha,

    Yes Vit K works well with Vit D.

    I do not not have problems with Vit D supplementation so am not highly knowledgable on it as just swallow the pill and get on with it ! ..

    I also supplement fish oil.

    Flower

  • It was like magic to me, really. I waited to get that tense feeling and did not. I was impressed to say the least! Now I pretty much rely on the fish oil A & D. Those two go together very well and I don't feel any ill effects from it. It is not raising my D, but perhaps sustaining it.

  • Don't ask for "the generic" - ask for Lannett levothyroxine. It is Unithroid but when packaged as a generic it is apparently less expensive. Generally receives favourable comments.

    You can see it is the same because the pills have identical markings - e.g. JSP 514 for the 50 microgram tablet.

    If you ask for "the generic" you could get a different make each time you get a prescription dispensed.

  • Wow, Helvella, thank you! I just called my pharmacy to see about it and she said, that's the first one we filled for you in Sept., the Lannett, and yes, even though it's not Unithroid, it has the same pill markings. I looked at my bottle and that's right, that's what it is! Geez..... I will def take that one again, and just see about it. I did take one 50mcg Synthroid this morning. Tomorrow I'll use the JSP 514 pill. This is somewhat of a relief to me. Appreciate that!!

    Now guess what else this pharmacist said to me. She said she gets these complaints all the time about T4 medication. She said a lot has to do with the season. I was like, What? She said in the winter when it begins to get colder we need less T4. Ummm....I told her I've been reading a lot of things, but I've never heard that one. Have you ever heard this? Thanks!

    Marsha

  • The traditional thought and practice was to increase dose in winter. Typically something like 12 or 25 micrograms a day extra for those on full replacement. Exactly when varies.

    However, we live in a world which is often far-removed from the climate that exists outside. With artificial lighting, with central heating, with all the other things that insulate us from that climate, we could actually end up with very different needs.

    Also, I don't remember (if you even said) where you live. The differences between Alaska and Florida, via Hawaii are considerable. :-) Not that I could make an informed assessment based on that.

  • I live in a temperate, 4-season area in northern Virginia. With her line of thinking it confused me, because I thought in winter metabolism sometimes slows down, so yes, an increase. I'm going to double check her on that when I go in to pick up pills. I don't need to rush over there now since I still have leftovers from the first bottle. It's really too bad thyroid people don't have monitors like diabetics. It would be helpful!

  • Marsha,

    I'm with Helvella on this one (regardless of lighting & heating) in thinking we need MORE thyroid hormone over winter months.

    Less natural heat and light has a sluggish effect on the body.

    Flo

  • I'm with you & Helvella too, it only makes sense. We don't typically have high metabolism in winter, although I think many wish we did! She def had her thinking backwards. But I had never heard of this seasonal thing before.

  • I don't think she's necessarily wrong in some ways. Especially if she is a bear doctor...

    Gen Comp Endocrinol. 1998 Feb;109(2):192-9.

    Thyroid hormone concentrations in black bears (Ursus americanus): hibernation and pregnancy effects.

    Tomasi TE1, Hellgren EC, Tucker TJ.

    Author information

    1Department of Biology, Southwest Missouri State University, Springfield 65804, USA.

    Abstract

    Previous studies on thyroid hormones in hibernating bears have used very few sampling periods, so that the time course of any change is poorly understood. In this study, plasma sampled from pregnant and nonpregnant black bears before and during hibernation (16 samples each at 10-day intervals) was assayed by radioimmunoassay for concentrations of thyroxine (T4) and triiodothyronine (T3). Only free T4 showed a difference (P = 0.019) between females that produced cubs and those that did not, but this appeared to be due to higher preimplantation values. Free T3, total T3, and free T4 varied (P = 0.001, 0.038, 0.002, respectively) among sampling periods: during December, bears had depressed concentrations. These lowered concentrations were maintained during hibernation for the free hormones. Our data confirm previous work showing that food restriction and/or physiological preparation for hibernation is coincident with depressed plasma concentrations of thyroid hormones. Hormonal changes associated with pregnancy were minor.

    PMID: 9473364 [PubMed - indexed for MEDLINE]

    ncbi.nlm.nih.gov/pubmed/947...

    :-) :-) :-)

  • LOL!

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